Dementia Care

A guide for people who need dementia care

Introduction

Dementia statistics

What is dementia?

  • Causes of dementia
  • Types of dementia Lewy
  • Vascular dementia signs, symptoms & stages
  • Frontotemporal dementia symptoms

Diagnosis

  • Signs & Symptoms
  • What does a diagnosis of Dementia actually mean?
  • The test for dementia – what to expect
  • Prognosis and treatments

Living with Dementia

  • Case study & care plan for Ed
  • Case study & care plan for Monica
  • Case study & care plan for Sonja
  • Dementia care at home

Who delivers dementia care?

  • Care Agencies
  • Choosing – Quality & Assurance Care
  • The criteria used to measure the quality of care
  • How are standards maintained?

Introduction

During our lives, there are times when we may have lapses of memory. Common causes are distraction, stress or illness. We live in a complex society where we need to remember passwords we have created for different internet accounts, PIN numbers to access our money and also cope with the intricacy of food labels to make sure that we are eating a healthy diet. Even use of memory strategies can still result in occasional memory errors. With so much to remember, no wonder at times that our memory can fail us, either partially or completely. Most memory lapses have an explanation:

  • Loss of car keys may be due to a distraction that resulted in the keys not put in their usual place
  • Difficulty in finding the right word? For example, coping with stressful situations.
  • Failing to remember a person’s name? This can be explained by seeing that person out of their usual context (e.g. your gym trainer in the supermarket).

The occasional lapse of memory can be frustrating, but the real problem is when it affects daily living and occurs alongside other behavior changes and physical symptoms. Changes that occur can be quite frightening and invoke very high levels of anxiety which in turn may result in feelings of distrust and suspicion concerning their environment and those around them. Initially, the changes may be very subtle, but over time the symptoms will intensify until they affect daily life. At this point, support may be needed to enable continued independence. Initially friends and family may be providing that support, but over time more specialised support may be required. The fear for a lot of people living independently is that by asking for or accepting help, they will have to give up their freedom and live in a care home. With the right support, there is no reason why someone with dementia should not continue to live in at home as independently as possible. There is a variety of support available that can provide a truly holistic care package through support by care workers; domiciliary care; palliative care and live in support. This is achieved through an assessment by a care manager who will devise a bespoke care plan with the client as well as liaise with the GP and support any additional medical treatments. Care agencies support not just their client but also their client’s family.

Dementia Statistics

  • In the UK there are around 800,000 people that have dementia. Research has determined that by 2021 the number will have increased to 1 million.
  • It is predicted that 1 in 3 people over the age of 65 will develop dementia.
  • Two-thirds of people suffering from dementia are female.
  • Dementia is a term that is used to describe a group of symptoms that occur when the brain cells stop working properly.

According to statistics, there was an 8% of diagnosed cases of dementia between 2013 -2014.

What is dementia?

Dementia is a syndrome; this means that it has several symptoms all of which can have varied intensities and progressions which can have differing effects on individuals. What one person with dementia experiences may not be what another person experiences. There are several causes of dementia. Alzheimer’s disease being the most common cause closely followed by Stroke. The specific symptoms of dementia experienced will depend on the parts of the brain that have been damaged and the disease that has caused dementia. Dementia is a progressive terminal disease. The term “dementia”, describes a series of symptoms that include loss of and difficulty in accessing memory (short & long-term); difficulty with other cognitive abilities such as problem-solving; processing language; mood changes and changes in the capacity to exhibit appropriate behaviours. Dementia is caused by the degeneration and death of brain cells at a rate that far exceeds the natural ageing process of those cells. The trigger for the degeneration is usually due to a buildup of abnormal proteins in the brain. Degeneration of brain cells can cause a decline in mental state and well as in physical abilities including balance. The structure of the proteins is different for each of the different causes of dementia. There are four causes of dementia:

  • Alzheimer’s
  • Lewy bodies
  • Vascular
  • Frontotemporal

Dementia Facts

  • As the structure of the proteins differs for each cause of dementia, it is possible to determine the type and prognosis of the disease.
  • It is possible to have more than one type of dementia at any one time, and this is referred to as ‘mixed dementia.’
  • Dementia is usually thought to be hereditary but in fact, it is only frontotemporal dementia that has a possibility being genetic.

Types of dementia

Lewy bodies

Lewy bodies are lumps of protein that develop in the brain cells. There is no known cause for the for the Lewy bodies. The Lewy bodies interfere with the chemical messengers in the brain particularly the chemical messengers that affect memory; learning; mood and attention. What we do know is that Lewy bodies are connected to Parkinson’s disease. Parkinson’s disease and Lewy bodies’ dementia can affect the brain over a period of years and cause progressive involuntary movements such as tremor; reduced muscle flexibility and general lethargy.

Vascular dementia Signs & Symptoms & stages

The main cause of vascular dementia is an interrupted blood supply to the brain. The brain needs a constant supply of both blood and oxygen, if that supply is restricted then brain cells start to die. If the blood supply is sporadic, then fatty deposits build up in the blood vessel walls causing limited blood flow. Limited blood flow or atherosclerosis is found in people who have very high blood pressure or diabetes. During a stroke, the blood supply to the brain is disturbed and may cause damage to the brain cells. But this does not mean that everyone who has had a stroke will develop vascular dementia.

Frontotemporal dementia symptoms

In 20% of frontotemporal dementia cases, the cause is believed to be genetic. This type of dementia is the most common for people under the age of 65. Frontotemporal dementia is caused by the shrinkage and damage to the frontal and the temporal lobes of the brain which in turn causes damage to both the nervous system and muscles over a period of time. Motor neurone disease may be associated with frontotemporal dementia. There are many secondary causes of dementia-like conditions such as depression; lack of thyroid hormone; lack of vitamin B; brain tumours; traumatic head injury; misuse of alcohol and Huntington’s disease. If dementia is caused by any of these lesser conditions then the disease is usually not as progressive.

Demntia Diagnosis

Signs & Symptoms

The first sign of dementia experienced or observed is problems with memory. At this point, it is a good idea to discuss and concerns with your GP and if they feel that it is a concern they will arrange for you to have an assessment to determine the presence of dementia. Other signs and symptoms may follow over a period of time. It is important to realise that dementia is a progressive disease and does just happen overnight. The symptoms increase in severity over time and eventually become so debilitating that a person who has dementia can become unable to do many daily activities or care for themselves. They may experience:

  • Difficulties in making decisions or may act impulsively (including where finances are concerned.
  • Exhibiting little or no understanding of a situation or predicament.
  • There may be an absence of empathy towards other people.
  • Language difficulties especially with reading & writing. Reading may be affected by concentration difficulties.
  • Writing may lack a flow and relevancy. Speech may be difficult to follow as it may be fast and ideas disjointed.
  • Confusion over everyday issues.
  • Agitation and impatience with other people.
  • Experience hallucinations (auditory, visual and tactile)
  • There may also be difficulty in controlling body movements.

After experiencing difficulties with memory, it is not unusual to experience problems with social situations. It is possible at this point that aspects of personality may change to the point that someone who was understanding and supportive now lacks empathy and interest in other people. In fact, they may become disparaging about other people to the point of rudeness. It is also quite common for someone with early stage dementia to appear to tell untruths on several occasions this can be partly due to memory problems and partly due to their lack of compassion and understanding of others. At this point, it may seem that the person with dementia is quite unpredictable. They may find the process of planning and organisation of projects, time and their belongings progressively difficult. They may shun help as it can be seen by them that friends and relatives are trying to take their independence away from them. At this point, they may need help with any decision making as they may not the clarity of thought to come to a conclusion.

What does a diagnosis of Dementia actually mean?

Although there is no cure for many forms of dementia once a diagnosis is made, then there is treatment and support available to help slow down the process and to help the patient and their family plan for the future. Many people who have been given a dementia diagnosis can live a full and active life, free from some of the more debilitating symptoms. For some people knowing what is wrong with them can give them some form of peace of mind and reduce much of the anxiety that they have been experiencing.

The test for dementia – what to expect

Initially, the assessment may involve a few standardised questions by your GP that can determine the need for any further testing. There are some websites that will provide you with some initial screening questions. Dementia assessment may include additional medical family history; additional questions; blood tests; brain scans to diagnose the cause of dementia to develop a full prognosis.

Prognosis and treatments

Currently, there is no cure of treatment that can change the course or the progression of the disease. Nevertheless, there are several medications and also some types of cognitive therapies that can help reduce some of the experienced symptoms. Cognitive therapies include: Art Therapy – to help with stimulating the creative side of the brain and support decision making. Memory – particularly long term memory and to help accurate recollections Sensory – by using tactile experiences, which may be art related but can include culinary skills. Cognitive skills therapy – this may include learning a new skill, a new language or revisiting a skill not used for some time such as knitting (which also helps muscle memory).

Dementia Care Plan – Living with Dementia

Case study & care plan for Ed

Ed is 78. He lost his wife five years ago. He copes very well at home, but just recently he has found that he tends to lose his memory as the day progresses which in turn causes him to become disorientated and ultimately anxious. His doctor has assessed him and feels that the deterioration over the course of the day is due to a decline in Ed’s cognitive abilities. A care plan for Ed may include: 1. Establishing a routine to help Ed feel orientated as the day progresses.

  • This should include rest times, eating times and sleep times.
  • Support cognitive abilities (particularly memory) by producing a calendar (updated weekly or even daily) and displaying family photographs.

2. Domiciliary help for routine tasks such as laundry, cleaning and cooking.

  • This will help take away a lot of pressure and anxiety.
  • Encourage Ed to help with some of the tasks as this will help muscle memory.

3. Enable Ed to stay active and orientated by devising a timetable of activities around his interests and hobbies.

  • By supporting his interests, it helps him to become more confident in his abilities.
  • Encourage Ed to join in activities outside of the home with other people (preferably in the mornings).

4. Discourage Ed from leaving home in the afternoons.

  • As the day progresses, Ed becomes more vulnerable due to memory loss and disorientation.
  • Encourage Ed to talk about his interests and memories as this can help maintain neural networks.

Ed’s progress should be assessed on a weekly basis and changes to support made accordingly. Risk assessment should be ongoing.

Case study & care plan for Monica

Monica is 84 and was diagnosed with dementia four years ago. Her main difficulty revolves around nutrition as she tends to miss meals and is not interested in the meals that are offered to her. She has lost a significant amount of weight recently and has been assessed by her doctor who found that there is no other medical problem that has caused the weight loss. Monica does go shopping independently but tends to buy chocolate, sweets and doughnuts. She finds it difficult to plan meals and is often too tired to cook for herself. Monica often feels very flat and does not want to socialise with other people. A care plan for Monica may include the following objectives: 1. To encourage Monica to eat two meals a day 2. Provider her with food supplements (such as Ensure) 3. Make sure that she is hydrated 4. Encourage her to weigh herself weekly. These interventions could be achieved by daily visits from a care worker to enable Monica to:

  • Take an interest by selecting food (this can be either through planned shopping ordering meals from a home delivery service).
  • Advise her to drink Ensure once a day.
  • Encourage Monica to drink four glasses of water a day (the water could be flavoured).
  • Praise Monica when she achieves any weight gain no matter how small it may seem.
  • Hydration will also help Monica’s general mood. The care worker should also engage Monica in conversation to enable her to discuss her fears and anxieties with the view to helping her to seek advice from a counsellor.

Care worker to advise Care Manager of Monica’s progress weekly and review. Highlight any concerns and make changes to the care plan.

Case study & care plan for Sonja

Sonja, 88. Sonja lives in her own home and up until recently was supported entirely by her family. She was diagnosed with Dementia several years ago, and some of her symptoms have recently escalated. She has become intolerant of her family and will often become aggressive towards them by shouting and generally becoming angry. Her family report that at times she does not have anything positive to say about anyone and she will often speak very unkindly to family members. She handles her finances well but can be easily influenced by what other people say. Sonja has become a bit of a hoarder and finds it hard to let go of pieces of paper that have no sentimental value. Sonja wants to stay in her home, but she has found it increasingly difficult to attend to daily chores such as laundry, and light housework. Offers of help from family are often seen as suspicious by Sonja. She has also reported several hallucinations: auditory; visual and tactile. She has also recently experienced 2 falls. A care plan for Sonja may include the following interventions and support: There are several very complex issues that need to be taken into consideration.

1. Aggression & Anxiety.

  • Helping Sonja to feel less anxious
  • Supporting her family to understand Sonja’s anxiety
  • Work with the family, so they feel appreciated

2. Hoarding & housework

  • Counselling. Sonja may benefit from counselling to help her feel less anxious additionally to help her understand her difficulty.
  • Practical support to tidy the home to make it liveable
  • Undertake household tasks such as laundry and dusting.

3. Falls. Assess to see if there are any untreated injuries from past falls. This can be achieved by encouraging Sonja to visit her GP.

  • Check to see if Sonja is wearing appropriate and well-fitted shoes.
  • Use a stick or walking aid to help prevent further falls.
  • Risk assess the likelihood of further falls. This assessment should include looking at whether there are any obstacles in the home such as rugs that slip or objects that prevent clear pathways between rooms.

4. Liaison with GP.

  • Report any new symptoms
  • Distribute medications
  • Discuss the need for other interventions such as counselling or physiotherapy.

5. Possible live in care to enable her to stay at home

  • Discuss the possibility of live-in care
  • Take into consideration the positives and the negatives.
  • Balance the need for independence

Care worker to advise Care Manager of Sonja’s progress weekly.

Caring for someone with Dementia at Home

Even the most supportive of families will need some form of respite care at some point. Depending on the needs of the person with dementia they may require some level of support for their loved one in the following areas:

  • Eating. This may include food preparation; meal planning and help with eating (cutting up food etc.). By involving the client in food preparation, it will help them with planning and organisation in other areas of their life.
  • Dressing. Support in this area can be on many different levels. Planning what to wear will involve decision-making processes, (this can help in other life areas). Practical help dressing will reduce the frustration of coping with zips and buttons. Supporting the client to decide on suitable clothing.
  • Washing & Bathing. It can be very hard for an adult to accept help with personal care and they are more likely to accept it from a care worker than a family member. They may just need practical help getting in or out of the shower.
  • Mobility. When a person has advanced stages of dementia they may need physical help to use the toilet or they may need the use of a wheelchair if they go out of the house. Helping them to leave the house they will feel less isolated.
  • Safety in the home. Because a person with dementia has compromised balance, it is important that their home is a safe place without any hazards that may cause accidents. If any changes are made they need to be made slowly to prevent confusion.
  • Telecare technology. This involves the installation of monitoring devices that can determine if outside doors have been left open or use of sensors on the bed to determine if they have got out of bed etc., this type of technology supports independent living but with a safety net.
  • Advance care planning. By making sure that people with dementia get the support that they want this can significantly reduce incidents of challenging behaviour. The antecedent of challenging behaviour is usually anxiety, and by reducing anxiety, and fear there are less stressful incidents.

Who delivers dementia care?

Dementia care can take place in a care home, but it is becoming increasingly common that it takes at home. A visit from a carer specialised in dementia means that they have a good insight into the associated difficulties. Feel confident in discussing:

  • Care plans including any medications that have been prescribed and their side effects.
  • Any emotional and social challenges experienced such as wanting to speak to friends or seeing family.

Care Agencies

A good care agency or care provider will have staff that is sympathetic to the needs of the client who has dementia; they may also have a qualification in dementia or have had in-house training in the speciality.

Choosing – Quality & Assurance Care

In-home care services agencies must have all of their staff checked by the DBS Disclosure & Barring Service (DBS), their references scrutinised and their quality of care assessed that it meets both the agency and the client’s standards. Selection of staff is made through a stringent selection process which may include further training for successful candidates. Care staff should be personable and approachable. They should not be intrusive and personal care should be carried out with respect and understanding.

How are standards maintained?

CQC sets that standards that Care Agencies need to provide for their clients. This includes making sure that the services offered meet the needs, rights and circumstances of the client. Examples of standards include:

  • Checking how medications are managed.
  • Highlighting safeguarding issues.
  • Looking at good outcomes especially in cases of long-term care.
  • Involvement of the client in the assessment of their needs, specifically involving the client in the choice of carer when personal care is needed.
  • Evaluation of client’s being treated with compassion, dignity, and respect.

Standards are also maintained internally through appraisals of staff by the Care Managers and directives from the CEO of the Agency The criteria used to measure the quality of care are:

  • Respecting and involving people who use the service
  • Care and welfare of people who use the service
  • Cooperation with other providers
  • Requirements relating to workers
  • Keeping records

All of these issues matter to the client. All care facilities and care agencies that provide domiciliary care in the UK are inspected by the CQC on a regular basis. (Care Quality Commission (CQC) published a new strategy, Raising Standards, Putting People First — Our Strategy for 2013 to 2016). There is a wide range of services available to meet your needs and although some of the benefits to access these services are means tested, you may be eligible for the payments to be paid directly to your choice of care agency. A good care agency, such as Vida, will not pressure you into signing long term contracts or expect payment for care prior to you receiving it.